Recent reports in the news about illness resembling
variant Creuzfeldt-Jakob Disease (the human form of
Mad Cow Disease) have raised the question in my mind
about whether certain results from tests performed in 2004
are being withheld from public release. I am concerned
over the possibility that the first human death in the U.S.
from vCJD acquired in the U.S. may have already occurred.
(The death of Charlene Singh was actually the first
confirmed death from vCJD in the U.S., but she is
believed to have acquired her infection in England.)
If true, this is an event of enormous historical importance.
Like the first death from AIDS, it may be the precursor
of a major epidemic of preventable illness. It would not
serve the public interest to withhold this information or
delay its release, if this event has occurred. I have no
information which indicates that this event has occurred.
I have no information at all. That is why I am seeking
the information which would resolve this question.
On December 28, 2004, I sent a letter to the CDC FOI
office, following the instructions given on their website he
http://www.cdc.gov/od/foia/foidir.htm
I requested "any records in the possession of the CDC
regarding the results of any tests performed by or for
the National Prion Disease Pathology Surveillance Center
between October 15, 2004 and December 15, 2004 on
human central nervous system tissue".
According to CDC's FOI page, I should have received a
postcard from them acknowledging receipt of my request
when it was logged into their system. I also should
have received a response within 20 working days.
I did not receive a postcard or any other communication.
On February 4, 2005, I called their phone number, and
their spokesman confirmed that my request had been received
and logged as case number 05-0278. I was told that the
records I had requested had been received by the CDC
FOI office from the laboratory involved, and the records were
in the process of being reviewed for release. In a subsequent
phone call on March 14, 2005, I learned that the requested
records had been received on January 20, 2005, and that
the records are still in the process of being reviewed.
This is an extraordinary long delay in the release of
these records. This delay does not lessen my concern.